This is a long read. I do not apologize.
Did you know there were five Marx brothers? Everyone knows Groucho, Harpo, and Chico. There were two more: Gummo and Zeppo. They weren’t nearly as well known. Rumor has it that there may be two more, younger, perhaps illegitimate brothers, heretofore unheard of. When it comes to show biz, everyone wants in on the act.
My own brother, Newt, has had a very hard time of it as of late. I’ll try to give it the full run down. It’s a mouthful.
Earlier this summer, Newt had a bout with a kidney stone that required lithotripsy. It was a large stone. Having had stones and lithotripsy myself, I can tell you that there is nothing pleasant about the entire experience.
We were working on two different substations in North Mississippi, in the July and August heat. Other than the stones, Newt said that he just wasn’t able to take the heat like he used to, and got unusually fatigued in the afternoons. These maladies could mean anything, from some lurking disease, to the more likely fact of being over sixty. We are both over sixty now, and it pains us to admit that there are things we can’t do as well as we used to, and some that we just can’t do at all. It is sometimes better for a man to admit this to himself rather than have his body make him painfully aware. But a man’s ego is as big, or bigger, than he will make it, and he is reluctant to give any of it up.
Sometimes, the decision to curtail our ego is made for us. My own bout with CLL made me aware of that a decade ago. I have recovered some of my former self, but I’ll never be what I once was. Our bodies age. We grow old. Our worlds get smaller. Our interests get more narrow. If we live long enough, our world reduces to the same size it was when we were a young child, then we fade into insignificance. It is not a pretty picture, but it is life. We resist this as long as we can. Eventually, it overtakes us.
Preparing for hunting season at Timberview Lodge, a family business we all work in, while bush-hogging in one of the many pastures in preparation to plant green-fields, Newt got some foreign material in his right eye, which got severely infected. It was infected enough that the inflammation put pressure on his optic nerve and caused him a temporary blindness in his eye. This was alarming and sent him to an Ophthalmologist. At first, they thought it was a tumor, but then decided it was a severe infection, so they treated him with antibiotics and large doses of prednisone (a corticosteroid).
Stay tuned, as steroids are a recurring theme. Physicians use steroids to reduce inflammation long enough so that the body can hopefully heal itself.
After this, he developed blood clots in his legs and a pulmonary embolism. Not only were these extremely painful, but they were life threatening. He was admitted to Anderson Regional Medical Center in Meridian and treated with a variety of medications. While there, it was discovered that he had all the signs of having a blood cancer. At this time, It was unknown what his blood cancer was. He was referred to Dr. Hemocastle, an associate of Hemosapien, my own hematologist. Hemocastle ordered a bone marrow biopsy with flow cytometry and cytogenetic testing so that they could confirm a diagnosis. After the blood clots stabilized, Newt was released from the hospital. His pain in his legs did not get any better and he was barely able to get up and walk around. In the meantime, we waited for the results of the Bone Marrow Biopsy to come back and an appointment with Hemocastle to confirm the diagnosis. The following week, I loaded up Newt and his wheelchair, and off we all went to Hemocastle’s office. It did not turn out to be a good day.
Now I know everyone in Hemocastle’s office…the physicians, the nurses, the clerks, the phlebotomists, the lab technicians, the business office people, and the business manager. I am a veteran of that clinic. Having been a veteran, I confess that I was guilty ten years ago of something that is not unknown to doctors everywhere, particularly, I suspect, by oncologists and hematologists. I was also guilty of it on this visit.
Sometimes, doctors have bad news for us. The fact that they are bearers of the bad news sometimes makes us feel like they are our enemy, as if their having given a name to our disease makes them the reason for our having the disease. My first reaction was to think that my doctor did not know what the hell he was talking about; he was a crackpot; a third-rate doctor in a third-rate clinic in a third-rate town, trained in a third-rate medical school. That sounds hard, but I have confessed to Hemosapien that I felt this way. I have since repented. He has since forgiven me. I will keep him until I don’t need any doctor for any reason anymore. I hope he outlasts me.
I’ll admit that Hemocastle got the same initial review from me upon hearing what he had to say about my brother. Hemocastle was unable to make a distinct diagnosis, and had he been able to, I would have still felt the same way…skeptical, doubtful, distrustful. Hemocastle said that Newt’s biopsy indicated he had Myelo Dysplastic Syndrome (MDS), but his symptoms indicated he was more likely to have Chronic Myelomonocytic Leukemia (CMML), neither of which have a very wide range of treatments, a rather short term prognosis for the effectiveness of the available treatments, and a short time to the only real opportunity for substantial treatment and/or cure, which is an Allogeneic Stem Cell Transplant, which comes with a whole set of its own serious risks and hazards. They don’t do those in Meridian, so Hemocastle was arranging for us to go to Jackson to meet with a Dr. Herrin, a hematologist there. I agreed to take Newt that same day if he could get us in for the appointment.
As Hemocastle was making arrangements, Newt began to suffer severe chest pains. We asked Hemocastle to get an ambulance on the way to get him over to the hospital, just two blocks away. They made the call, and on came the ambulance.
I appreciate EMT training. We all want EMTs to be successful at what they do. I’m glad the EMTs that came for Newt only had to take him two blocks to get him to the emergency room. They hooked up their portable EKG machine, decided that he wasn’t really having heart trouble, that he likely just had the flu, and communicated this to the emergency room on the way there. When they hooked him up to the EKG there, and Dr. Touchheart, a cardiac surgeon looked at it, he declared, “He’s having a heart attack!”
They immediately got Newt in the OR, did a heart catheterization, found a single 98% blocked artery, put in a stint, repairing his blocked artery before he actually had the heart attack, preventing him from having any heart damage. This was simultaneously unfortunate and fortuitous. I’d sure have hated for my brother to have had his heart attack halfway between Meridian and Jackson. The outcome might have been completely different.
Newt stayed in the hospital for two days, until they were sure the Plavix, a blood thinner, was doing the job and the stint was in good order, then they released him to go home, blood cancer diagnosis and treatment notwithstanding, and in the grand scheme of things, the heart trumps a blood cancer in need of treatment sometime in the near future. Hearts won’t wait for much.
At home, the pain in Newt’s legs and arms subsided a bit, so everyone thought that his heart condition was contributing to the pain. Perhaps some, but not all. In a few days, he was readmitted to the hospital because of the blood clots. He stayed there for ten days. They installed Venous filters to catch any clots that might work their way loose and make their way to his lungs, which has an immediately grim prognosis. While he was in the hospital, nauseated, unable to eat, his kidneys failed. They put in temporary ports in his neck to be able to put him on dialysis. He had dialysis three times, each time giving him a severe, crushing headache.
Sometime in the middle of the night, perhaps after his second dialysis, Newt awakened to discover that he had suffered a sudden bilateral complete loss of hearing. When I say he lost his hearing, I mean his hearing went to zero. He did not pass go; he did not collect $200.00; he went directly to hearing jail. He is still there.
With Newt languishing at Andersons, no one able to make any sense of all the myriad things that were befalling him, it seemed incumbent for us to get him to another health care facility. We tried for several days to get him transferred to a tertiary care center, like UAB in Birmingham or UMMC in Jackson, but there were no beds available. This went on for several days. No luck. There was no room at the inn for my brother.
I’m sorry to say this, but hospitalist to hospitalist requests seem about as effective as parking lot attendant to parking lot attendant on getting admissions attention from a tertiary care facility. It is observable in Newt’s case that a parking lot attendant would have been no less effective in accomplishing this, nor likely any more.
Hospitalists have been around for a while, though not on everyone’s radar as a physician category. They are a somewhat-but-not-completely useless form of physician that hospitals get to charge you extra for; a doctor you don’t know, don’t hire, who doesn’t work for you but works for the hospital, or works for a contractor who is hired by the hospital. Those contractors find hospitalists wherever hospitalists can be found, likely from the rolls of otherwise unemployed physicians. They manage your care among the various physicians treating you in a hospital stay. I do not like the fact they they are not a physician I have any basis in choosing. The hospitalist at Andersons was a nice fellow, but he had no skills of persuasion. If I sound harsh on hospitalists, you will indulge me. If you are a hospitalist and are reading this, best wishes in your future medical practice and godspeed to your patients.
Finally, a long-time friend of Newt’s, a hunting buddy, a physician from McComb, Mississippi, made a call and pulled a string or two at UMMC. Simultaneously, a long-time family friend who is a nurse practitioner at UAB was working on our behalf to get him in there. She called me with specific instructions on who Hemocastle was to call and what he was to say to them. I think the arrangements were made, but the protocol had to be followed. I called Hemocastle.
“I have the number and name of the MIST operator at UAB. Call them and make the case for Newt’s admission and they will let him in,” I said, not having any idea what a MIST operator was, but knowing that this person responsible for critical hospital-to-hospital transfers was expecting Hemocastle’s call.
Hemocastle replied, “I have been on the phone with UMMC. They are going to admit him. I am getting his records ready. Do you want me to stop and call UAB?”
That was a prudent question. I sincerely admire them when I can get them.
“Absolutely not. Do not undo anything you have started with UMMC. A bird in the hand is worth two in the bush. Go with the bird in hand. UMMC it is.”
Within two hours, Newt was on the way to UMMC via ambulance.
Kidney failed, completely deaf, and blood cancer certified but undiagnosed as to what kind, newly stinted and Plavix blood-thinned, and blood clotted Newt spent that night alone at UMMC. I arrived the next morning at 5:30AM. I spent the next week with him on the Second Floor North Wing at UMMC, the same floor where they have all the patients with infectious diseases. It was to be a good place for Newt, but not a good place for me. I had worked it out with Dottie, Newt’s wife, to take that first week. She would come in and relieve me after that if necessary, which it was. Businesses don’t run themselves, and we both had a lot to do.
Hemosapien knew that I was there. “It’s just a matter of time for you on that floor,” he said, adding that in my immunocompromised state, it was a poor choice of a place to be. I don’t reckon I had much of a choice. He knew that.
Not being able to hear is tremendously frustrating for someone who just developed this condition. I ran interference for Newt. I talked with all the doctors, spoke into my free speech-to-text app on my Android phone (Big Note is the wonderful App), and was able to show the text to Newt so that he would know what was going on. This is a poor substitute for being able to hear yourself, but it was all we had. Note pads proved to be too slow.
I have never witnessed a tertiary care facility/teaching hospital in action. It was a wonder to behold. In this environment, I can see where a hospitalist is necessary, as you basically have no doctor and never know what doctor(s) you are going to see or when. Dr. McKenzie, the hospitalist who served us while I was there was outstanding. Newt had teams of nephrologists, neurologists, hematologists, otolaryngologists, and endocrinologists working on his behalf. Attending physicians, senior fellows, resident specialists (some experienced, some fresh and unsure of themselves. One has to start somewhere.)
Dr. Wisit was the attending nephrologist. He is from Thailand: gregarious, friendly, funny, caring, and an all around good fellow as far as I can tell. His last name is unpronounceable by the western mouth. His first name is Wisit, so I called him “Hu”. You could hear him half-way down the hall as he approached, his admiring residents in tow. He’d knock on the door and say, “Dr. Wisit.”
I’d say, “Hu! Hu Wisit?” and he’d just laugh.
In just a couple of days of treatment, they got Newt’s kidneys back working after telling me that he had a less than 25% chance of getting them back. Dr. Wisit explained that his kidneys had failed due to a hyperviscosity of his blood caused by a high white-blood cell tumor burden combined with high immunoglobulin levels.
“Sort of like Tumor Lysis Sydrome?” I asked.
He looked at me incredulously. “Exactly! How do you know about this?”
I had held my hole card until I was called; I wasn’t bluffing.
“I have CLL. I am a veteran blood cancer warrior. I know lots of things.”
He then began explaining lots of things to me, pleased that he did not have to define things as he went. He was explaining and I was understanding.
Before he left, he said, “You ask very good questions.”
“It’s my job,” I replied.
I would like to thank Dr. Wisit and his team: Dr. McManus, Dr. Ali, Dr. Howell, and another doctor whose name I regret I cannot remember. Dr. McManus was particularly helpful, and I give her an extra big thank you. Regaining one’s kidney function is a big deal in the scheme of things.
The Otolaryngologists were called in to examine Newt’s ears and a problem in his throat. They could find no reason within the scope of their discipline as to why Newt had lost his hearing. Dr. Christopher was determined to get to the bottom of things, yet was ultimately thwarted, deciding that some complication from his blood cancer, or some heretofore undiagnosed neurological problem had caused his hearing loss. It was, however, beyond her scope.
This seemed to get off with her pretty bad. She was a determined doctor, but Newt’s illness was more determined. I could tell she did not like that one bit. I admire her. When she finishes her residency, she will make a good doctor. No doctor wins them all.
The Neurologists seemed to think like the Nephrologists…that Newt’s blood cancer had caused his hearing loss. The did an MRI with a contrast dye approved by Dr. Wisit, since Newt’s kidneys could not take regular contrast media. They found some irritation on the nerves going from Newt’s ears to his brain which could be the problem, but could not pin it directly on that. They said they would treat that with steroids (see, steroids again) which would reduce inflammation and perhaps allow his ear nerves to return to normal. They also did a lumbar puncture (spinal tap). The lumbar puncture revealed nothing but ruled out a host of things. As Hemocastle told me, they have to do one else get real egg on their face for having not done one if the ultimate doing revealed something that is readily treatable. It did not. Newt’s medication, Plavix, had thwarted previous Spinal Taps, since no radiologist would do one as long as he was on the medicine. Dr. Shoba said that they do them all the time on Plavux-medicated patients.
The Neurologists serving Newt were (my favorite) Dr. Shoba, from Bangalore in the beautiful Karnataka province of India. I had practiced and practiced saying it right and still failed when I tried it. “KAR-nuh-TAH-kuh,” I said. She laughed out loud, proving that despite rumors to the contrary, the occasional Neurologist can have a sense of humor.
“Kahr-NAH-tuh-kuh,” she said with a big smile. “How do you know about Karnataka?”
“I like geography. I look at maps. I look at YouTube videos about all kinds of places. Bangalore and Karnataka are among them. There’s lots to learn about India. It’s a fascinating place”
The other neurologists were the attending Dr. Huang, from China, who you could tell was revered by his residents for his medical knowledge, his practice, and the humility and gentleness with which which he conducted himself and towards his patients. There was also Dr. San Luis, who seemed to grow as a doctor from one day to the next. I was a bit harsh with her the first day I met her, but the next day, she was great and I repented because I needed to. Maybe we both did.
Dr. Wynn, an endocrinology resident came in to tell me that she would be in shortly with the team. They were there because Newt’s glucose levels were all over the place, primarily they said because of the steroids that were giving him, and they would get it sorted out so he could stabilize. The only other funny thing that happened while I was there was with the Endocrinology team.
Newt had been eating very little, but he did have a taste for ice cream and a strawberry milkshake. I had gotten him the milkshake the day before and it sent his glucose level into orbit. They did not mind, since he needed nourishment, but they needed to get him stabilized. While waiting for the team to come in, Newt told me he wanted some ice cream, which they keep at the nurse’s station. I walked out of the door and into the hall and went up to the counter at the station. There, lined up in a row, staring right at me, was the entire endocrinology team, four doctors in total, preparing to come into Newt’s room.
“May I help you?” asked the lady at the desk.
I sheepishly looked at her. I looked over at all those endocrinologists. I looked back at her.
“Well….” I stammered, “I hate to ask this while all those endocrinologists are staring at me like a den of foxes at a wounded rabbit, but my brother wants some ice cream.” They all busted out laughing. I laughed with them. “Maybe I should slip around the corner and whisper what I want, sort of like it’s a drug deal or something.” More laughter.
The senior physician, no doubt the attending, said with a big smile, “If your brother wants some ice cream, let him have it. We’ll take care of his blood-sugar.”
That senior one was Dr. Subauste. From the moment he walked in with Dr. Wynn and the others I could instantly tell that he was a man of great bearing and dignity. I asked him where he was from.
“Peru,” he said.
We continued our conversation, to his great pleasure, in Spanish. In Spanish he explained. In Spanish I asked questions until my Spanish failed me, whereupon he prompted me. I later learned from Hemocastle that Dr. Subauste is from a prominent family in Peru, a family of physicians and healers, and that UMMC was fortunate to have him there. I’d say that’s right. Thank you Dr. Subauste.
I will not be as kind to UMMC’s Hematologists. I never saw the “team” while I was there. Dottie didn’t see the team either. I only saw Dr. Chamberlain, a senior fellow. He was very nice, but an artful and diplomatic question dodger. He never answered a question on the first try, but tried to blow you off. I am not easily blown off, particularly by hematologists dealing with blood cancers. Hemosapien, Hemocastle, and Gooday will amen that.
I told him the other disciplines had indicated that they thought his blood cancer was the cause of Newt’s complications. He blew that off. I blew back.
“Well, you need to get with the others and ask them WHY they think his blood cancer is the cause, because they all do. I keep hearing about a big meeting you all are supposed to have, but no one has yet had that meeting or if they have, no one has told me of the outcome of that meeting. When do you plan on having it?”
“Well……blah, blah, blah,” he said.
“So….blah, blah, blah,” he said.
I moved closer to him, getting between him and the door as he looked like he was ready to bolt. This is a practice of mine when dealing with new doctors, since, blocking the door, they can’t leave until you are through with them. Sometimes doctors have a way of disappearing when they are through, even if you’re not.
“We haven’t yet received a concrete diagnosis. Is it MDS, or is it CMML? When you decide, how do you propose to treat him and when do you plan on starting?”
Again, he tried to dodge, diplomatically and artfully, but dodge just the same, indicating the kabuki dance of different disciplines putting off on other disciplines what they cannot explain themselves. I was aware of all that. I am not a physician, but physicians are not exempted from this vanity of human nature.
“You display great skill in not answering my questions,” I said. If he was going to dodge, I was going to let him know that I knew he was dodging, and by golly he was going to admit it.
Finally…“We aren’t yet certain on a diagnosis,” he said. No dodge there. That was the truth.
“When will you have one?” I asked.
“This afternoon,” he said. No dodge there, either.
We still didn’t get the concrete diagnosis that afternoon; they didn’t have it. Apparently, from my own study, differentiating MDS from CMML is not easy, but it can be done. It takes the collection of a lot of data over time to be certain of which. It is no real matter, since treatment for both is the same….same drugs, same course of treatment, all ultimately leading to a bone marrow transplant if the treatment can’t stop the progression, and if the patient is healthy enough to receive one.
A Dr. Long incorrectly wrote down CML (Chronic Myeloid Leukemia) rather than CMML, a big difference in the extra M. This had been communicated to Dr. Bethina, another hospitalist, who told Dottie that the diagnosis was CML. I’d rather my brother have CML than CMML. So had Hemocastle, so had Hemosapien, so had all the other hematologists in the world. There’s lots of different ways to treat CML, the brother of CLL (my own cancer). CMML? Not so many.
I told this to Hemocastle, who had talked to a hematologist at UMMC, a Dr. Elkins, who said that someone was confused. My thinking on this confusion was, of course, the confusion lay with the laymen. It wasn’t this layman. It wasn’t me. Nor was it Dottie. I was suspicious of that diagnosis the instant I heard it. It was Dr. Long who was confused. It was Dr. Long that left out the extra M. I’ll bet a dollar to a dime that he’ll never do that again.
The nurses at UMMC were all wonderful. I would like to name the ones who cared for Newt while I was there: Nurse Charlotte, Nurse Margaret, Nurse Tall Margaret, Nurse Sarah, Nurse Rachel, Nurse Jessica, and Nurse Tracey. There were others. They were all great. The nurses there never stop, but go full steam their whole shift. I salute them.
If you are a caregiver for someone at UMMC, prepare to be disappointed in your food choices. Prepare to be disappointed in the coffee, as someone has decided that Starbucks is what you need to drink. Go to McDonald’s or Cups in the atrium for a good cup of coffee. I was terribly crestfallen on the opening day of the new coffee shop in the first floor main entrance lobby. I walked up to the counter and looked at the coffee urns. All Starbucks. Blech!! Thank you, nurses, everywhere, for making me coffee!!
One also needs to be prepared to get himself out of the parking garage. It cost me $127.00, which is unconscionable.
Thanks to the nice folks in the Toyota who gave me a jump start as I stood there in the parking garage, dead battery, with jumper cables hooked up to my Tahoe and in hand, grinning like the Cheshire cat at everyone who passed; you stopped and helped.
Newt is back home, he and his working kidneys. He still can’t hear a thing, which is tremendously depressing for him. If you care to google it yourself, look up “sudden total hearing loss” and see that there is such a thing. It is unexplainable. Sometimes, hearing returns just like it went out. Sometimes it doesn’t, though it seems the longer the deafness holds, the less chance of hearing returning. This is a major life-altering occurrence.
Newt has started his chemo, taking a drug called Vidaza (azicitidine). He is in good hands with Hemocastle. He has gone to the mat for Newt. I appreciate him and his continuing care for my brother and his forbearance of me. I am not easy. Thank you, Hemocastle.
I also appreciate all the many times Hemosapien has stopped to see me while I was in the waiting room, came to say hello while were in the hospital, called me or sent a text to check on us, and even checked on me while we were at UMMC. All of the hematologists/oncologists at Meridian Oncology Associates are outstanding and an asset to our community. Thank you all for your service. I have often said, and I reiterate, I do not envy you in your job. It is a hard job.
I developed a name at UMMC. “You must be ‘The Brother’”, they said when they saw me. Or, “Are you ‘The Brother?'” they’d ask when they called on the phone.
Yep, I’m the brother. I’m one of the obscure brothers.
There was Groucho, Harpo, Chico, Gummo, Zeppo, and less famously, surreptitiously, Lympho (me), and Myelo (Newt).
We’re the other brothers. More than blood brothers….blood cancer brothers.
©2019 Mississippi Chris Sharp (aka Lympho)
PS…a special thank you to Nurse Practitioner Carol (UMMC), the wonderful speech pathologist at UMMC whose name I swore I’d never forget, and Onco-Nurse Sandra (MOA) Also: Dr. Clark at JARMC, Dr. Aul at JARMC, Dr. Bruckmeier at JARMC, and Dr. Touchstone at JARMC.
PPS…the longer I was at UMMC, the sicker I got. It took me a week to regain mobility from the flu, and I am not quite myself yet. I am not complaining. I knew the risks. I will recover. Not for a single instant did I bemoan my own illness; I was only thinking of my brother, whose blood cancer has made him far more ill than mine ever has. Your prayers for his healing and restoration are earnestly solicited.